Recognize, Prioritize and Formalize Grassroots Caregivers

After witnessing the devastating effects that HIV/AIDS had on their communities in Africa in the 1980s, and experiencing the multiple stresses that come with caring for someone on their deathbed, home-based caregivers recognized the need to combine their efforts, resources and expertise into a broader movement. They created the Home Based Care Alliance, which today represents over 31,000 volunteer caregivers in 11 African countries. The Alliance enables those groups that are already performing home-based care to gain recognition and self-representation at the local, national and international levels. Collectively, they are calling on their governments to recognize their crucial role in community development, to include them in policy design, to increase and redirect funding to the ground, and to establish an official role for home-based caregivers in international AIDS programs.

Home-based caregivers must be recognized as experts and compensated as such if the HIV/AIDS pandemic is to be put to an end. Coming from Ghana, Kenya, Malawi, Nigeria, South Africa, Uganda, Zambia, and Zimbabwe, women from the Home-Based Care Alliance are converging in Washington, D.C., this week for the International AIDS Conference. They are resolute in their efforts to create a space for their work in the global HIV/AIDS dialogue to get the acknowledgment and remuneration they deserve and to tell the powerful story that is so often completely ignored.

Milly Namuri, an HIV/AIDS widow, was neglected and outcast by her family because of her HIV-positive status. They refused to even share utensils with her, fearful of contracting the disease. However, Milly's situation changed when she met Rose Babeeyo-Nalongo, a caregiver. Rose found Milly bedridden, and began paying daily visits to nurse her back to health, bringing her food and water, bathing her, taking her to the hospital, and reminding her to take her medication. Rose also educated Milly's family on HIV transmission and prevention, encouraging them to accept her HIV-positive status.

This is how many home-based caregivers' work begins. Most of the care work in Africa is being carried out by HIV-positive people, though their work is not adequately appreciated, recognized, or compensated. Today, family members and caregivers account for approximately 90 percent of all care provided for HIV-positive people in sub-Saharan Africa. Compensating for an increasingly overburdened health system, their care work ranges from paying school fees for orphans to providing food for those on treatment.

Photo credit: The Huairou Commission.

After almost four decades, HIV is no longer a death sentence. With increased use of antiretroviral treatment, more and more HIV-positive patients are looking for physical and psychological support to maintain their health, from their initial diagnosis through the entire course of their illness. Home-based caregivers provide that support, teaching HIV-patients important skills to help them live, as opposed to supporting them through their death.

However, despite the fact that home-based caregivers are the first responders at the forefront of the global response to HIV/AIDS, their contributions continue to remain largely unrecognized. Caregivers say: "We are experts. We are organized. Everybody talks about us. We need much more recognition. We need to sit there at the decision-making tables. Because whatever everybody is discussing is about us. But we need to be there, because anything about us, without us, is not for us."

Challenges Caregivers Face

Approximately 87 percent of caregivers use their own money to cover costs of visiting and caring for clients. There is an extreme shortage of even the most basic protective gear, such as gloves. They travel far distances, paying their own transportation costs, leaving some without the money to feed their own families. Many lack supplies such as umbrellas for home visits during the rainy season and are left without the supplies to properly care for those who need it.

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Photo credit: The Huairou Commission.

Through the Home-Based Care Alliance, women organize themselves to fill in the gaps where funding and governments have fallen short, and hold governments and donors accountable for making sure those funds get to the ground. The importance of their work must be recognized and supported, as they provide a link between those who are most affected by HIV/AIDS and formal health and government intuitions, amplifying the voices of people living with HIV.

When grassroots caregivers come to the International AIDS Conference next week, they will advocate for recognition:

"We call upon governments, partners and donors to recognize caregivers, compensate for the work done, and involve us in all HIV/AIDS programs. We are in the communities; we know what we want, where we want to go, and how to get there."

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